The assessment of and communication about pain for children and young people with Juvenile Idiopathic Arthritis: Developing new approaches

Abstract

Pain is a complex multifaceted phenomenon and pain assessment is challenging. The challenge is increased when pain occurs in children and young people (CYP) with a long-term inflammatory, relapsing remitting musculoskeletal condition such as Juvenile Idiopathic Arthritis (JIA). The aim of this PhD was to explore methods of pain assessment and pain communication with CYP in paediatric rheumatology and to investigate the suitability of new approaches. Four studies were undertaken. A systematic review of studies involving chronic pain assessment in CYP was conducted. Pain assessment methods were evaluated against adapted quality criteria. The administration of pain assessment scales was found to be highly inconsistent and poorly reported across key domains such as use of measurement anchors, time referent periods and number of successive assessments undertaken. Methodological inconsistencies across studies and poor reporting of pain assessment methods limit the conclusions which can be made about CYP with chronic pain and provides little evidence to support administration decisions regarding new pain assessment tools. A key output of this review was a set of new reporting guidelines for pain assessment in this target group. The first primary research study of this thesis was a qualitative investigation of healthcare professionals’ (HCPs’) beliefs about pain assessment and the priority given to children’s pain reporting in clinical paediatric rheumatology settings. Semi-structured interviews were analysed through framework analysis. The study identified several themes including limited training in pain assessment, low confidence and avoidance of pain discussions. In clinical settings, limited knowledge, skills and attitudes of HCPs are currently acting as barriers to assessment and communication of pain, alongside organisational barriers such as limited time and resources. Interpreting pain assessments is complex. The second qualitative study explored the interpretation of key pain features by specialists involved in pain management of CYP with JIA. Data from two focus groups of different types of professionals were analysed using latent thematic analysis. While there was some overlap in the systems each group used to synthesise multi-dimensional pain assessment data, there were notable differences in pain assessment interpretation between pain specialists and rheumatology specialists. This study highlighted that professionals from different disciplinary backgrounds give different weightings to pain features in their interpretations of pain assessment data. This finding is important when considering the development of new pain assessment tools. The final studies comprised of two-phases and utilised mixed-methods. Phase 1 recruited CYP to take part in one week pilot testing of a novel, multi-dimensional pain assessment mHealth tool called My Pain Tracker (MPT). Semi-structured cognitive interviews were used to investigate CYPs experiences of using MPT. MPT was found to be an acceptable, usable and feasible remote monitor for pain assessment. In Phase 2, CYP were recruited into an n-of-1 trial to explore the appropriateness of four different timing schedules for MPT administration. CYP and parents took part in semi-structured telephone interviews about their experiences of different schedules. Completing MPT daily helped CYP to scaffold their pain experiences in a way which supported comprehensive data capture about pain without recall difficulties. More intensive pain reporting schedules were, however, associated with subjective pain reactivity, impacting upon mood and pain reporting in some CYP. Findings from this work are essential for the development of administration guidelines (particularly timing) for long-term engagement and sustainable data collection of quality pain data by remote mHealth pain assessments in CYP with JIA.

Date of Award	31 Dec 2018
Original language	English
Awarding Institution	The University of Manchester
Supervisor	Wendy Thomson (Supervisor), Lis Cordingley (Supervisor) & Amir Rashid (Supervisor)